Life with autism, breast cancer and other adventures

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Monthly Archives: June 2013

Today, as we were driving around Eagan, my sweet 7-year-old called out from the back of the van “Mom, I’m so done with Philip Phillips – ugh”. She’s had a series of awesome one-liners this week – mostly just silly things, but they make me smile because more and more, she is outwardly expressing her personality. I’ve been sharing several of these on Facebook lately because they are so Ada, & I believe confirm that she has a fairly awesome sense of humor. There is a reason her new nickname is “Sassy Pants”!

We also celebrate Ada’s ability to share new facets of her ever evolving personality with us because this ability didn’t come naturally for Ada – she’s had to learn this skill (and so many others) bit by bit, piece by piece, step by step. Thankfully, she’s had a lot of help along the way . . .

Yesterday marked the end of an era at our house & to be fair, I’m still feeling a bit shaky about it. For the past 9 ½ years, we have had a behavioral therapy program in our home, and now, as of yesterday, we don’t.

Our kids have grown up with “big friends” in our house. We started therapy just a few short months after Elliott’s ASD diagnosis – Henry was barely walking! I remember the day H came home from 1st grade, so surprised that not every family has big friends that come to their house to play – who knew?

From the very moment I opened our front door 9 ½ years ago until we waved goodbye yesterday I have felt gratitude, thankfulness & above all – hope. Our lives and our children’s futures are all better because of home-based behavioral therapy. It feels so hollow to simply say “thanks” to those who gave so much of themselves to help our children and our family. It reminds me that one of the lessons that autism has taught me is that there are so many amazing, talented & caring people in this world that we would have never encountered otherwise. Our children will be the wiser for it, indeed.

There is no doubt that it takes a village to raise a child with autism, and in our case, an insanely large, specialized village to raise 2 children with autism and their brother. While I’ve never officially counted, throughout the past 9 ½ years, we’ve worked with a vast number of people. One benefit that I think it has given our kids is exposure to a great number of different styles of people. Some connected more so than others, & here and there I would think to myself “this person is never going to cut it” only to have Elliott or Ada adore them passionately and learn amazing new things because of some random trick or hobby they shared. Some, had we not met them in a therapeutic nature, would be people I’d love to chat with over a margarita – others – not so much, and still others exposed my kids and my family to adventures, hobbies, games, songs, & outings we might never otherwise had a chance to experience. We have so many memories to cherish.

I believe people are called to careers like this for a reason. Often, I would ask how our therapy staff members chose this path, and the answers were often surprising. Many had family members with some sort of special need which gives me hope that when Henry becomes an adult, he won’t have only resentment for growing up sandwiched between a brother and sister with autism. Still others had planned on pursuing some sort of position in social services , stumbled on this field, and changed course. Some were very private, and I’m left wondering how and why our paths intersected. No matter the reason, I tried to remember every day that these people made a choice to help children with autism while Tom & I were drafted. It does not escape me that my path never veered anywhere close to helping kids and families with autism, and I am ever grateful to those who choose to do so.

Some ASD parents I have met along the way can’t wait for therapy to be done in their house – to not have new & different people coming and going all the time, crazy schedules, parent training and meetings. I get that, and can completely understand where they are coming from, but I’ve never been one of those people. Maybe it’s because I grew up in a big extended farm family where people were always coming and going, and that was not hard for us to get used to. More likely, because within about 30 seconds of having “big friends” at our house, life started getting better. The fear I have of Tom & I going it alone is overwhelming sometimes. While we have accomplished so much, as a Mom, I’ll never stop wanting more for my kids, and I hope we have what it takes to help our kids.

Yes, our big friends have empowered us to continue this journey on our own, and given us lots of tools for our toolbox, but I’d be lying if I said we are not a bit wobbly right now. 9 ½ years is a long time – frankly it’s been like a lifestyle for us. Change is challenging for many people with autism, and frankly, it might be harder for me than our kids. Indeed – the apple has not fallen too far in this case.

For those that have followed “Reflections from the Red Couch” for some time, you may recall that 2 years ago, the very day that Elliott completed his therapy program, he promptly walked down to the basement and pooped in the litter box. Yep – he really did. I swear. Here’s the link: https://reflectionsfromtheredcouch.wordpress.com/2011/05/ You’ll be happy to know he has not done it since, and that more than likely, it was a random cruel joke that the end of his therapy program and his decision to give the cat box a go happened simultaneously.

That said, I’ve been on pins and needles since yesterday when our very last big friend (Rachel) left us around 2:30. Ada had made her a picture of the two of them playing together, and gave it to Rachel as she was packing up. Both Rachel & I were a bit teary – after all, she’s been with our family longer than anyone we’ve ever worked with – 6 years. Ada was not even walking when she started at our house. She’s seen it all – the good, the bad, the ugly & the amazing. She’s been with us through E’s Kindergarten, early warning signs & subsequent diagnosis for Ada, toilet training, a million and one playdates, Batman, Bob the Elf and Ada’s Kindergarten.

Throughout the last couple of months, Ada has been excited to be done. She feels ready to be a big first grader, and even though she likes her big friends, she will tell anyone “I don’t need my big friends anymore”. She kind of thought Rachel & I were a little weird to be teary – after all, she’s confident that she’s ready for this (& I’m thankful one of us is!). But after she waved at Rachel out the window, and watched her pull away, she turned to me with tears in her eyes and said “Mom, I’m going to miss Rachel – but I still don’t need my big friends”.

So – no litter box moment for Ada (yet), but I think she got it right. She will miss Rachel, and all her big friends, but she’s ready to walk this path on her own now. And I will be following her, a little wobbly for now, but still filled with hope.